Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism

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Photo by Javardh on Unsplash

You’d think after ten years of knowing you, I’d be an expert in you.

You’d think I’d have learnt so much about this thing called Down’s syndrome.

You’d think I’d have learnt so much about what makes you tick. Your likes, your dislikes. Your needs and your wants.

You’d think.

I am your mum after all. To some, like me, the title ‘mum‘ is badge worn with honour in all situations. To others, it’s a lazy or condescending title, used to belittle and control. Don’t call me mum they say. With feeling, with reason.

I hope they are heard.

Some say I’m supposed to be an expert in you, yet there are no letters after my name. They mean this as a compliment I think. To me it’s just a pressure. I am no expert in you. If I were, I’d know what made you cry instantly. I’d know what you were really experiencing as you bit down on your hand, making it bleed in, well I don’t know…is it pain, is it frustration, or is it fear? Help me out here will you? I’m no expert.

I ask you, every time. What’s the matter? But you cannot reply. Not in the way I wish you could. And it takes rather more than a degree or a PhD to interpret the reply you undoubtedly do give.

I try to help you learn to eat, but do you want this food? Is it to your liking? Or is it too hot or too cold? Too difficult to swallow? Too sweet? Too sharp? Shall we just give up and use your feeding tube instead? I don’t know.

And about learning to walk…how are those orthotics feeling today around your ankles? Do they hurt? Are they too tight? Is that why you fall to your knees and stay in one place, or is it because those boots are just so darn heavy?

Why have you taken your glasses off? Did they rub your nose or does the prescription need changing? Ahhh I see they need a clean. Here, let me help you with that. If only you’d said.

What would you say to me if you could?

I am no expert in understanding you. In reality, I know so very little about you. But my face is always turned towards you. My ears are attentive to your plethora of sounds. Your cry. I am sorry I don’t always give you what you need. This is not ok. I wish I could.

Sometimes I may see what it is you want but do not give it to you. This is ok. It may not be what is best, not just for you but for others around you. You are part of us and we all matter.

What matters to me most is that you are always heard, even if you are not always understood. Even if what you ask for I cannot give as it is outside of my ability to either understand or grant or it is in someway detrimental to another.

Heidi Crowter

Our friend, Heidi Crowter…who really is our friend and who we have enjoyed spending time with in the past, has recently been asking for something. Unlike my daughter, she is able to say what it is she wants. Whether or not she gets what she wants is another matter, and one not for me to decide thankfully, though she has my support and my sympathies.

What matters most to me, I’ve been reflecting on, is not the outcome of her case. As others have been quick to highlight, the judge said her appeal was unlikely to succeed. They may well be right and of course, time will tell.

No. To me the most extraordinary thing of all about her journey so far – whether one agrees with her case or not – is what took place last week in the Court of Appeal in London.

Heidi Crowter: a woman with Down’s syndrome stood publicly to speak in the Court of Appeal and was not shut down, either as she spoke, or by the decision of the judges that ensued in allowing her to appeal. All of which happened on International Women’s Day of all days.

Type the words Down syndrome into Twitter, or Google and you’ll soon find, as I did just the other day, words of hatred spoken about people with Down’s syndrome. Words that seek to destroy and shut out people with Down’s syndrome – even from life itself. I even reported one such abusive tweet that referred to another child with Down’s syndrome as “an abomination to this planet ” and that they “wouldn’t consider it as human”. Twitter responded by saying this tweet had not broken any guidelines.

Twitter replied to me, but did they hear me? I’m not so sure.

Whatever happens next in the Heidi Crowter case, that historic moment in the Court of Appeal will never be taken away from her. And I’m no expert, but I am thankful to the two judges who are. They listened to and they heard Heidi. And, I believe they understood and recognised her need to be properly heard in the highest court in the land, regardless of whether her wishes can or should be granted.

That is extraordinary.

Author: alisonjane2014

Married. Mum of 2 girls, one of whom has Down's Syndrome. Follower of Jesus. Finding joy in unexpected places.

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